Bob Leahy interviews HIV-positive YouTube Phenomenon Aaron Laxton

Aaron Laxton was diagnosed with HIV just four months ago. But in those four months his YouTube accounts of living with HIV and his advice for HIVers have been getting lots of attention.

SEE AARON'S VIDEO MESSAGE TO POSITIVELITE READERS AT THE FOOT OF THIS POST.

Bob Leahy: Hi Aaron. First off I have to say how much I’m admiring your YouTube channel “My HIV Journey”. I’m struck by a number of things. Number one is how good you are at it. Do you have a background in broadcasting or something?

Aaron Laxton: Thank you for your kind words. It has been a work in progress that has definitely morphed into something quite different than what I originally had intended for it to be. Everything that you see I've learned from one video to the next. I don't have any history or previous experience in broadcasting.

You’re a natural. You could have been a DJ or a newsman or something

I actually get that quite often and I consider it a compliment. I really strive to produce videos that are informative, entertaining as well as professional.

How old are you?

I’m 32 years old.

And you have dogs? I’m a dog person too. I want to know what kind you have.

I have two beagles, the oldest is Maxwell and he is a lemon beagle; the youngest is Oliver and he has made a cameo on some of my latest videos.

Another thing that strikes me is that you're extraordinarily knowledgeable about HIV, even though you haven’t been diagnosed all that long. We’ll get to that diagnosis part in a minute but where does all your knowledge come from?

Honestly, anywhere and everywhere. I read whatever I can get my hands on. Thebody.com was one of the first websites that I went to after my diagnosis. It’s simply jam packed with some great information. I take the role that I have as a video maker very seriously. People watch my videos and expect that I 'm giving them the right information, so I try to be as knowledgeable as possible.

Aaron, I want to ask you a bit about what it’s like to be newly diagnosed, in 2011. You were diagnosed June 6, 2011, right?

Yes. I received the news around 10.45 that morning.

Do you want to talk about that? Was this a routine test or did you think something might be up?

For sure! I had engaged in some risky behaviour. A short time later I had noticed that I had swollen lymph-nodes in my neck and other areas of my body. I had spoke with a friend of mine and confided in him that I was scared that I would test positive. During this conversation he encouraged me to go get tested and told me that he would go with me to get tested. A few days after this conversation I woke up, called my doctor’s office and told them that I needed to get tested and that was basically it.

Do you remember the exact words they used to tell you that you were HIV positive?

I think that those words will forever be in my mind just like they are in every person that has ever heard that they are positive. My doctor told me that the test had came back and that I was positive for HIV. That yes, life would change but life was not over. It is important to know that I have gone to the same doctor for awhile and when I got tested I let him know that I was prepared for a positive test. I was hoping that it wasn’t but from everything my body was telling me I knew that I was.

And so do you remember what you said?

I didn’t say much. In those moments every possible scenario was running through my head. I think for the first time this was a moment in which I was relatively speechless.

I remember when I got my diagnosis – this was way back in 1993 - feeling very, very strange, very different, on my way home from the doctor’s office, as if my life would never be the same again. In fact I thought I would never be happy again. Can you relate to that?

I can. I actually whipped out my iPhone and recorded a video and it was then that I determined that I was going to do something positive (no pun intended) with my diagnosis.

Who did you tell first? And was that easy or not?

The first person that I told was my best friend. It was a very brief conversation, short and to the point. I followed the news by telling him that he'd better not tell anyone. I find that interesting now since I tell everyone, but in those first few days I was struggling to find my footing after receiving the diagnosis.

You made a video seven days after you were diagnosed; in it you said you “refused to participate” and you seemed very down, very depressed. But you didn’t say you were positive. Why was that?

Yes, the first videos that I made were a series of videos compelling my viewers to get tested for National HIV Testing Day. It was actually a video title “It will never happen to me” on June 30th when I revealed my status. The video that you mention was one that I'd never really intended to post, however I wanted my viewers to see me during my bad days and my good days. That is really what life is about, taking the good with the bad.

You made several more videos before you actually came out as HIV positive, while you were promoting HIV Testing Day. Was it difficult to make those videos when you knew you were positive yourself? How did all that feel?

That is a great question. I would say that I was probably numb but it was something that I knew that I had to do. I am very much a people person and I would like to say that I'm relatively well-known in the St. Louis LGBT community. I knew that HIV was not something that people talked openly about and that I had to use my story to try to get others tested as well as reducing stigma.

You’ve said “when you are diagnosed it’s one of the loneliest places to be” even though you may have friends and a support system (See Aaron talking about that here.) I think I know exactly what you mean, but can you explain what you meant for those who aren’t positive - this dichotomy between the support you will likely get and the loneliness?

This is an interesting concept that really is difficult to explain. It's sort of one of those things that is unique to someone that has received a diagnosis of HIV or possibly cancer or other disease. When I first found out I spent more time consoling friends and those around me rather than being consoled and I always found that quite ironic. People want to be there for you because they are your friend or they love you yet many times they simply can't find the right words - and in the end there are no “right” words that can make it better. I think that this is simply part of the process of dealing with the diagnosis. At the end of the day when no one is around and you're all alone there is one surety and that is that you'll still have your diagnosis. For me I would look down and think “OMG I have this virus pulsing through my veins” and yet I'd put on a smile and deal with the world. I guess that’s the best way that I can describe it.

Now becoming infected in 2011 has its own story, I think. Some people say it’s harder to get a diagnosis in 2011 than it ever was. I’m not sure that’s entirely correct because a diagnosis back in the day meant you were going to die pretty soon. But is there, do you think, a feeling out there now that people who are diagnosed in 2011 must be stupid or something, to ignore all the messaging we’ve had for decades?

Interestingly enough I recently competed in a leather competition for the title of Mr. Midwest Leather 2011. During the interview I was asked a question similar to this so I'll give you the answer that I told the person that asked it. I knew the consequences of the things that I was doing. I knew that if I had bareback sex that there was a risk that I would become infected. Just the same as a person that gets behind the wheel of their car while drunk could get in a wreck and kill someone. You never think that it will happen to you. I accept accountability for my diagnosis and hope that by telling my stories to others it will help them to make better choices than I did.

How about the fact that you were pretty well versed in HIV prevention? Did that make the experience worse for you, or what? Do you think people were judging you?

Not at all. Look, people are free to think whatever they will; however their thoughts do not change my diagnosis. People make mistakes and poor choices. Even while people are reading this interview I'm sure that they can think of a time that they have made a poor choice or two. Does this mean that they should be ridiculed or judged solely on these poor judgements? No. Allowing others to beat you up for your diagnosis or for that matter beating yourself up over your diagnosis is not going to achieve anything other than making you sick. In the end, for me it was a diagnosis. Yes, life would change but I would like to think that it has changed for the better and now I am on this HIV journey.

Good answer. Let’s change the subject. I want to talk about how you use social media. Back to your YouTube channel. Why do you do it?

When I first started it I was learning about this thing called HIV. Yes I had some knowledge but nowhere near the amount that I do right now. I wanted others who were positive to know that they were not alone and that the things that they were feeling were OK. Sometimes it's easy for us to get into a mindset that we're going through something alone or that no one else could possibly know how I'm feeling. That's simply not true and a myth that I wanted to quell with my videos.

What you are doing is really amazing. Clearly you want to help people. But how much is it about helping YOU, because that’s important too – what we do for ourselves, right?

Oh, I will be the first one to tell you that I've learned so much on this journey of making these videos and doing other advocacy work that I do. Not only do I learn but I also get a chance to talk to amazing people from around the world. People will message me on facebook, twitter or YouTube and they proceed to tell me about their diagnosis or their medication - and this helps me just as much as it helps them.

Is it easy to build a following? Do you have a sense of how well you are doing?

Honestly, it is something that I work at every day. I use social media, twitter, facebook and tumblr to get viewers. I had previously used social media during the Joplin Tornado that killed 155+ people in May. Using only social media, I was able to organize five semi trucks with supplies that were donated to victims of the tornado. The links to the interviews that I did with a local news station here in St. Louis about it are here and here.

Now I get more people who will recommend my YouTube channel to their friends or through word of mouth. Also if you type in "HIV" into YouTube my videos pop up, so it is kind of a numbers game.

You get quite a bit of feedback, right – comments and personal stories that people share with you?

I get all sorts of stories from people and they're really what's keeping me doing this, since it lets me know that the channel is making an impact on those that are infected as well as those that are negative. I get a mix of people that will reach out to me. I have heard stories from people who lived through the 80’s and have lost many of their friends or others who simply want me to know that they can relate to what I am going through.

I’m curious what you think about the way we do HIV prevention now. My impression is that our HIV agencies (ASOs and such) don’t have the outreach they think they have and that there is a huge underserved population – I’m thinking youth in particular – that aren’t really tuned in to their messaging. But they ARE turned in to the internet. And I don’t think the HIV community – those who do prevention work – have been good enough at trying to reach them. I mean putting up a website just doesn’t cut it, in my book. What do you think?

I would agree. I try to create a safe place where people know that they can talk to me about anything and everything. I do not judge and that is really the environment that we have to create. We have a lot of work to do and we have to utilize every tool that we have available. The great thing about the internet is that people can view it from the privacy of their own home. Besides that, youth are on the internet a lot, I am on the internet a lot. If we ever plan on being successful in working with young people we have to communicate in ways that they are comfortable with and willing to listen to.

You’ve said people don’t really want to talk about HIV. Could that also translate to mean people don’t want to LISTEN to people like you and me talk about HIV?

I think that if people talk about HIV then that is admittance that there is a virus out there that they could possibly get. No one wants to face their own mortality, but we have to address this in a proactive manner rather than a reactive manner. There is also a sense that condom use is not sexy and safe sex is not sexy - and that simply is not true. We have to get people to start having the conversation at the bar or wherever they meet someone prior to going home. In this manner it’s far easier to set the rules for safe sex and to not get caught in a situation where your safety is put into question.

I also think that you will understand when I say that I am going to talk whether people are listening or not; however I want to talk in a manner that makes people want to listen.

Why don’t they want to talk about HIV, do you think? Are they scared of it, or bored or just don’t think it’s about them.

As with most things in our society, we are desensitized and we are not scared. That is the wrong attitude. Yes there are some great medications out there. I am on Atripla and I love it! That being said, for people living in the United States there is an issue of being able to afford these great medications that can cost as much as $3-5,000 a month. The bottom line is that even though HIV treatment has changed, the prognosis for an AIDS patient without treatment and medication is the same as in the 80’s. To me that is scary - and it should be!

So how do you break that barrier?

I wish I had a formula for you. I think that we have to continue the work that we are doing and working to inform people. I also think that sharing our stories will help to open the lines of communication and dialog surrounding HIV/AIDS and other STD’s and STI’s.

What’s you biggest challenge, do you think, in doing the work you do in social media?

Creating fresh videos that are entertaining and educational can be a challenge sometimes, but it's a passion and one that I'm going to keep doing for a long time.

Facebook or twitter?

All the above. I am on facebook, twitter, tumblr and Hi5. Some people may use one but not another, so you want to broaden the ways in which people will be able to find you.

So where is all this going? Will we see more use of social media, do you think, as time goes on – more blogging, more vblogs, more interactive stuff we haven’t even thought of yet?

This is just the beginning. I have been told by many that I am along the lines of Dan Savage and when I hear things like that I am obviously flattered. I would be lying if I said that I did not want to be just as big because that would offer me a larger platform in which to reach people as well as those that are affected by HIV.

Aaron, if you could just get one take-away message across, just one, that you hope would really resonate with people what would it be?

Wow! That’s tough! It would have to be that HIV is preventable and treatable and that a diagnosis is not the end of the world although it may feel like it.

OK. A second one – because I know you have several audiences.

No matter how alone a person may feel there is someone that there that loves and would miss you if you were not there. If nothing else, I want anyone who needs to talk to reach out to me and I will talk to them and get them connected to the resources that they need.

Aaron, you really are quite special. Thank you so much for talking to PositiveLite.com. Is there anything else you want to say?

I appreciate everything that you are doing and regardless of what our role is we are all in this fight together. Thank you so much for talking with me.

About the Author

Award-winning blogger Bob Leahy first made his social media mark a decade ago on LiveJournal.com where there are still to this day almost 3,000 entries of his available to be read. He was a featured blogger on Ontario’s HIVStigma.com campaign, along with PositiveLite.com founder Brian Finch. He joined PositiveLite.com at its inception in 2009 and became it's Editor a year later.

Born in the UK, Bob’s background is in corporate banking, which he gladly left in 1994, after being diagnosed with HIV the previous year. He has chaired the board of PARN (Peterborough AIDS Resource Network) and has been an executive board member of both the Ontario HIV Treatment Network (OHTN) and the Canadian AIDS Society (CAS). He was inducted in to the Ontario AIDS Network’s Honour Roll in 2005. Bob is currently a member of Ontario’s GMSH (Gay Men’s Sexual Health Alliance). He also writes for TheBody.com.

In 2012, Bob was honoured with the Queen Elizabeth II Diamond Jubilee medal for his work and commitment to HIV/AIDS in Canada.

Bob continues to write for this site while in the Positivelite.Com editor’s seat, with a particular interest in HIV prevention, theatre and the arts in general. He is accredited media for a number of Toronto theatres. He lives in Warkworth, Ontario with his partner of thirty-two years and three dogs.